Calling All with Tumors 6 cm +

I went annually for mamos and never missed one. So when they thought they saw something and confirmed it was 1.7 on an ultrasound, sent me for a biopsy and then a MRI, which showed it as 2.2, I was not freaked out. I figured, and said to everyone, I was clear last year so I know we caught it early.

I was shocked when it turned out to be 6.2 and they said I'd likely had it for years but it didn't show up on the mamo! Turns out ILC often doesn't show up until it's quite large.

2 months before my mamo, I had even seen my Gyn, who completed a breast exam and found nothing.

Turned out, the cancer was against my chest wall, so my breast was covering it. So there was no lump, no pain, no indication. Except I was unusually tired but had chalked it up to working too hard and not getting enough sleep.

4 months before, I was so wiped I cancelled cooking Christmas dinner, something I've never done but now in retrospect that was a sign.

I think routine ultrasounds should replace mamos, with a baseline at 35, and yearly starting at age 40.

I'm so afraid for my 21 yo daughter now and am going to lobby for her to do this when she is older.  

I had found my lump. Actually I had dense breasts and always had a "hard spot" in my left breast since I was about 30. It never grew or did anything, until I hit 45. I then felt it had an edge to it...weird, so went in and sure enough, it was cancer and the tumor was described as 3.5 to 4cms. When I went to get a second opinion some three weeks later, the other hospital radioligist decided it was 7 cms? So I am not sure what size mine was, but because it was over the "magic" number of 5cms I was placed in a later stage which meant I got everything thrown at me. The good news is with neoadjuvant chemo my tumor shrunk to 7mm which is almost a complete response. But I wasn't happy for long.  I had a breast surgeon who ignored that and took 16cms out of my breast. And most of what she took out was not cancerous according to the pathology report, and since she is such a horrible doctor she never explained why she did what she did or GOD FORBID ASK what I wanted her to do...(I am not illiterate, she should have told me what she had found and described my options, her recommendations and allowed ME to decide what was to be done to MY body for MY LIFE! at the time of surgery.   To make matters worse, her boss, another BS said she would not have taken so much tissue.)  So the doctors are adding to the size of the actual tumor with anything that looks suspicious...just another illustration of how inaccurate and how ineffective modern medical science is. We haven't gone much further than the use of leeches in my opinion.

Any doctor that is put off by a 2nd opinion (or calling one a cold hearted bitch) is unprofessional… that behavior should be a sign that you must get a 2nd opinion IMO!

Speaking of large tumors, I just realized something that would be obvious if you were calculating volumes in 10th grade geometry, but hadn't occurred to me with regard to our tumors:  Namely a 6 cm tumor is not merely six times bigger than a 1 cm tumor.

Assuming that both tumors are roughly spherical, a 6 cm tumor is actually 217 times bigger than a 1 cm tumor! Don't believe me? Try the math yourself here: 

http://www.calculateme.com/cVolume/VolumeOfSphere.htm 

That's a major mind blower.

I couldn't find a chart on the 'net with spheres to compare, but I did find this childbirth dilation chart that gives a sense of just how huge a 6 or 7 cm tumor really is - at least in two dimensions. Six to seven centimeters is like a tennis ball. And you ladies with 10 cm tumors basically had grapefruit sized tumors (!)

I too, found my lump while in the shower.  I had just had my annual exam with a full clinical breast exam 4 months prior and nothing, nothing on self-exams, either until 12/13.  Then all the sudden I had a 2-3 cm long lump in my breast.  It turns out I have extensive DCIS and IDC in my right breast that just keeps growing like crazy thanks to the HER2+ status.  I was diagnosed on 12/23.  I live in AK and had to travel to Seattle to be seen/have the biopsy.  I went back home to spend Christmas with my kids and then I had to wait until 01/06 to come back down, get the rest of my scans, and meet with my team of docs.  They told me that the total area of involvement is over 13cm-WOW!  From zero to huge in less than a month.  So far my breast MRI, bone scan and axillary u/s came back negative.  Had my CT and brain MRI last week, but no news yet.  I'm meeting with my MO on Tuesday and getting my first round of AC.  Praying without ceasing that this tumor will just melt away!

MMTOMH they can't give you Herceptin with AC but they can give it to you after, usually with one of the taxanes (taxol or taxotere). If the plan isn't to give you Herceptin I highly recommend you seek a 2nd opinion. The only time they don't give someone Herceptin is if they have heart issues. If you had heart issue they wouldn't be giving you A of AC.

I had mixed IDC and DCIS in right breast multiple tumours...largest 6cm & then a surprise finding of small DCIS and LCIS in left breast after bilateral mast...age 38 had egg sized lump which grew from grape sized lum over two years which i thought was elftover from nursing and pregnancy.

chemo, oopherectomy, rads, arimidex 5 years and now nothing. Michelle

MMTOMH I don't believe Tykerb with Herceptin is standard care for early stage breast cancer yet but some of the trials seem to show really promising results. I didn't get Tykerb. It is used for advanced stage HER2+

Your treatment plan sounds like one of  the typical protocals for treating HER2+.  You can ask your onc about Tykerb but I do believe you might have to be in a trail to get it.

No I did not. I was in a gray area. If my nodes were positive or if I didn't get the first level out (10 nodes on the IDC side) I bet my rad onc would not have given me a pass. My margins were clear but close. I also think if I wasn't doing 5 years of Anastrozole I might have to do rads too. I'm ER/PR+ so I get to do the estrogen sucking drug for 5 years.

MMTOMH the thing is there is a percentage of us that only need surgery (based on staging). Problem is they don't know who that is. In my case there was a 40% chance I didn't need anything other than surgery… but that's not good odds so I did the chemo and take my estrogen sucker. IMO I'm good unless told otherwise.

The bmx was really the best course since I had no choice in the IDC side (small boob + big tumore = MX). The other side showed 4 suspicious areas, one that my BS was concerned about. He said it would have to be biopsied every year. It ended up being LCIS so he was right about the yearly biopsy.  His recommendation after the MRI was to do the BMX… this is after he initially said not needed, didn't like to remove healthy tissue and talked me out of it. Said "lets wait to see what the MRI shows). So glad he did an MRI of both breasts.

But remember our risk of a new secondary is actually lower than mets  (unless there's a family history or BRCA gene etc) Yes your risk is higher than someone who never had breast cancer but not quite as high as you think. You will be watched carefully too. Remember that you will be numb, no nipple sensation etc. Once its gone no turning back. You can always have it removed later. I would really discuss this with your doctors and get all the facts. I'm not discouraging at all. I'm quite happy to be rid of mine but I will admit I miss my right nipple

Also remember those of us that are hormone negative (like yourself, not me) usually have a better chance of no recurrance after 3 years. No gaurantee but pretty good.

MMTOMH Yes that does apply to HEr2+/hormone negative. It typically, if it's going to recur happens within the first 3  years. I would discuss this with your onc. HER2+ used to have significantly poorer prognosis but Herceptin has changed that. Not 100% guarantee but much better odds statistically. A lot of what you read online is old information. Herceptin has only been standard care for early stage for about 5+ years.

I had genetic testing too although no history in my family. There is an increased risk of having the gene in certain cultures (one of which I fall into). I also have a sister, brother, 1 nephew and 3 nieces so I felt it important to find out. Yes this gene effects men for several types of increased cancer risk too.

Phila,  you are in my prayers.  I am sorry you are going through this and I hope you can find some answers soon.  Keep us updated.

J-Bug here's another visual guide but it doesn't seem to go past 5cm. I know I thought a lime is huge and out tumors are bigger than that.

The MRI I had after 7 core needle biopsies indicated the tumor was 6.7cm. I had a sentinal node biopsy (three taken, sentinel node and 2 others close by) and all were clear. I do have mild lymphedema on side of chest. 

I had neoadjud. chemo and the tumor had shrunk less than half and the last MRI said it was "significantly less confluent" which I found out meant it was full of holes and breaking up.

I had bilateral MX and reconstructin in NOLA. I was not convinced that anbody could manage my dense tissue and wondered if it would happen again.

Did many of you have very dense breast tissue? I am wondering if many in this group had dense tissue because it makes cancer tumors invisible to mammogram, and sometimes even ultrasound. My tumor, huge as it was, was not seen my mammo, diagnostic mammo, nor ultrasound, just something "murky".

If this was you, check out areyoudense.org - the are doing some great work to "expose the secret of dense breast tissue".